The Long and Winding Road

I always approached her door with caution.

I longed to see her and yet I was fearful; apprehensive.

And when I peeked into her room, there she was: the woman in the wheelchair.

She looked just like my Mother.

When I entered the room, she would throw her arms in the air, grinning ear to ear.

Hallie! You’re here! I had a feeling you were coming!

I want a hug!

Did you fly here? On a plane? All the way from New York on a plane…?

Oh my…!

For more than ten years, we replayed this scene — and every time, I was grateful;
because after that, anything could happen.

Her mood could change in a flash; her sweet, playful expression could morph into a scowl; the loving caress transform into a clenched fist– ready to strike.

During one visit, my Mother raised her hands in the air; her fingers poised like a cat’s claws. She hissed, ready to scratch. I laughed; I thought she was playing, until a nurse quickly pushed me out of the way.

She scratches, she warned.

She scratches?

She scratches.

Just for the record, my Mother did not scratch people. But the woman in the wheelchair did.

And the woman in the wheelchair was, of course, my Mother.

I was always overjoyed when I found her in a good mood; we could have an upbeat, interesting conversation. On a good day, we would sit in the garden and watch the birds; exclaim over the view of Los Angeles; share stories of past.

But even on a good day, without warning the conversation could veer wildly –like a driver who suddenly ran off the road. Her words would become harsh, outrageous, nonsensical; her demeanor strident, angry, defiant; her memories jumbled, dark, impenetrable.

It happened so many times; you’d think I’d get used to it.

I never got used to it.

Sometimes it helped if I remembered an image suggested by my sister:

Think of her brain, she said, as if it were a piece of Swiss cheese.

Swiss cheese; not exactly scientific, but I liked the analogy. When my Mom appeared calm and conversant, I pictured her gliding on the solid surface. But any moment she could plunge into the void where she could no longer

Control her thoughts;

Temper her words;

Constrain her actions;

Or even have the power to try.

But even with that image to guide me, I never fully grasped what she was up against. Only now do I realize that the smart, complex, complicated woman who had been my Mother never stood a chance.

Dementia had claimed her.

And for me to think that “she wasn’t herself” was actually part of the tragedy.

She was herself, and her self was unraveling.

Perhaps it was just too painful to contemplate, but now I realize that I had witnessed the total disintegration of her being. Her personality and psyche had literally come apart, like pieces of a jigsaw puzzle.

Looking back, I think of dementia as a masquerade. Looks are deceiving; and because the woman in the wheelchair still looked like my Mother, I wanted her to be my Mother.

I wanted her to pull herself together, literally. I wanted funny, kind, smart, wry, dignified, wise, loving.

I wanted my Mama.

This woman embarrassed me.

Even years after her diagnosis, I desperately wanted to deny the power of the disease.

I never stopped longing for her to be the way she once had been.

I never stopped wanting her to be the person she could no longer be.

And that is my deepest sorrow.

The long and winding road that leads to your door
Will never disappear
I’ve seen that road before, it always leads me here
Leads me to your door …

…Many times I’ve been alone and many times I’ve cried
Anyway you’ll never know the many ways I’ve tried
And still they lead me back to the long and winding road
You left me standing here a long, long time ago
Don’t leave me waiting here, lead me to your door …

                                                           ~Sir Paul McCartney

A Swift Current Long and Winding Road

The Long and Winding Road that leads me to your door will never disappear Photo by Hallie Swift

The Long and Winding Road, words and music credited to Lennon & McCartney, Sony/ATV Music Publishing, All Rights Reserved.

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15 thoughts on “The Long and Winding Road

  1. Dearest H: This was a powerful one. Well said. Isn’t it amazing how much more clearly we can see them once they are gone?

    • Whenever you comment on my writing, I jump for joy! And I agree, I think the fact that this is not my current reality enables me to have perspective. If I were confronted by my mother’s anger today, would I handle it any better than I did then? I honestly do not know the answer. But I do hope others can take our experience and understand that fury is part of the disease (and at least will know they are not alone when they are confronted by uncontrollable anger and even cruelty). Thank you for commenting, H

  2. Thanks again for your insights and experience. It’s hard to get used to watching the doors close for someone. But you’re so right that we must accept and embrace this change while they are still with us.

    • j9…I think it is interesting that you use the word “embrace”…I had used it in an earlier draft…the line was: I embrace now what I dared not even contemplate then…but I decided that the draft was muddled and in the rewrite, embrace was dropped. But yes…to what extent and however possible, I think our decade long struggle would have been eased somewhat if I could only have understood, accepted and even embraced the powerful forces of dementia. Thank you once again for your comments, H

  3. Hallie,

    So beautifully written…so true. I was lucky that even though my Mom’s body failed her, her mind did not. My Daddy, however, is different…I’m never sure what I’ll get when I call or visit…I am lifted up when I am greeted by “my Daddy”, and plunged into sadness when it isn’t. I have to remind myself that it is NOT his doing…it’s out of both of our hands. And, giving up that control, that ability to “make it ok” is so difficult and so sad.

    Thank you for giving a voice to this part of life…hearing your experience gives us all knowledge and the feeling of not being alone. Keep writing, please.

    • Joanie, Your words completely reflect my experience: you are Never sure what you’ll get when you see your Dad, and that was how my Mom was for years; I called it “versions” of her, and I never knew who I would see when I walked in that door. And like you, I had to constantly remind myself that she no power to control which version I saw: or in your words it is NOT his doing. But I was hardly a saint…and could and did get frustrated and testy, and looking back, wonder if in some ways–of the two of us– I was the irrational one in my never-ending wish that she could just go back and be Mama…Thank you again for your comments, H

  4. Forgive yourself for making your mother’s dementia about “you”. Children define themselves through and around their parents and their parents’ accomplishments. We base many of our decisions on their decisions, accomplishments or failures. So in many ways we are them…or a close reflection of who we think/thought they were.
    It is difficult once we have defined our lives on these ideas to have another version of that person foisted upon us willy nilly. Particularly when we have become pretty settled into our view of the world. Their vulnerability makes us uncomfortable and eventually angry at them for un-settling our future. A complication that makes life harder in ways that we cannot handle.
    Smart us…smart girls like us who can figure out a game plan for everyday or business dilemmas can’t figure ourselves out of this very tough problem with no way out of a cruel future. So it is tough to face the same dilemma time and again that is unchanging. So almost unconsciously we blame the person who in better days gave us many of the tools, even the answers to how to manage tough problems…why is she not here for me now?
    I told my daughter that we can only do the best we can…and as Oprah recounts Maya Angelou,” when we know better, we do better.”
    You are sharing that you know better…I suggest that perhaps the mother you didn’t recognize was the mother who saw you could /did not see she saw your pain. And that you were both dealing with that distance. No regrets…you were on a steep learning curve hanging on for your emotional life and your mom understands/ understood cause she was your mom…somewhere in there she understood! mothers always do!
    Love ya
    Yesterday is a month since my mom died.

    V

    • Thank you for sharing your thinking and no it is not harsh but reflects I think many truths. I completely agree that my Mother was somewhere in there and somehow she understood (and that is why I loved Jodie Foster’s speech so much at the Golden Globes–discussed earlier on this blog). Before I selected the Long and Winding Road, the working title for this piece was She Loves You Yeah Yeah Yeah and I meant it…the point being that despite her anger I knew that the woman underneath the rage deeply loved me (curious and accidental that the two titles were virtual bookends for the McCartney Beatles career).
      And yes to Maya Angelou’s observation and I do think I grew over the years as I handled all the curveballs my mom could throw; I never ceased to be surprised by her new pitches (she could have won a Cy Young Award!). I hope that sharing here how I dealt with some things will help people as they confront similar circumstances. One of my inspirations for doing the blog was a friend who told me that I was the only person who had told her about the anger and rage…and so when her mother-in-law started hitting people she knew that her beloved was not unusual at all but in fact was at the mercy of the disease. No one tells you about these things and that is why I started writing about it…because people have the right to know both what could happen and that they are not alone…
      Actually I think you are probably right that I was angry in the beginning (though I remember it as turmoil and doubt and confusion) but that morphed into a multitude of other emotions, not the least of which was gratitude that I was able to share so much with her in the last decade. It might sound completely bizarre and counterintuitive and selfish, but I would not trade that decade for anything in the world. I plan to discuss that more in future posts.
      Thank you, H

  5. A beautiful, touching and very honest piece. Thank you for sharing this. We have posted the link to it on the monarcares’ facebook page for our followers

    • I am deeply touched by your support and thrilled that you are sharing my post with your followers. As someone new to the blogging universe, I do not really know how to build a readership, and your support is appreciated more than you can know. Thank you, Hallie

  6. I had to read this piece twice. I felt my heart pound fast from fear and then the feeling turned to sadness. First I was terrified that this would be my scenario but then I was sad for what you experienced and what the future may hold for my brothers and myself. The part when you said you wanted your Mama was particularly hard for me to read. I remembered saying those words when I was sick as a child, when I had cancer surgery, when my granddaughter died and if she had not been there, I would not have made it through those times. Now as a 58 year old grandmother myself, I fear for that day when I will say those words and there will be no response either from dementia or her passing.
    Thank you Hallie once again for helping me face these things. I have always loved Paul McCartney’s song and now I will hear it in a different context that never entered my mind.

    • Well, Francesca, your comments have brought me to tears. Yes, I know that is a tough, primal phrase and a desire/need I think we never get over.
      So many people refer to dementia as the “Long Goodbye” and I think that phrase and concept are completely absurd. I will probably comment on this in a post…but in a nutshell, it is not goodbye , long or otherwise, because the person is STILL THERE…though maybe not in the way we would like.
      I was thinking about this and the words to Paul McCartney’s song came to me– I thought they perfectly captured the longing that never left me throughout the ordeal. So No to long goodbye but Yes to long and winding…and though I have no doubt that Sir Paul was not thinking about the elderly when he wrote his song, for me his lyrics became a poignant description of the struggle and the sadness. I will never hear that song again without thinking of my Mom and everything we went through during the last decade of her life.

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